Wednesday, April 30, 2008
And then you the pain becomes normal and bearable. You can't get rid of it, but you can put it in one corner of your heart. And your heart still keeps beating. So you can go on.
And so you do go on. You get information, set about making a plan. And just having a plan feels so good, you can even forget that the pain is still hanging out there in that little corner of your heart. Because having a plan means that maybe this will only be for a period of time. It won't be for the rest of your life. And she can survive. So you can survive. It'll just be the new normal.
And then you start connecting the dots. You find another Wilms' family, who did the same plan. You read her journey. You read about 13 hours of waiting, just for a room on the cancer floor to get chemo. You read about a much anticipated trip home for Thanksgiving ... half an hour on their way, they got the call that his counts were too low. They had to turn around. You read about pain and vomiting and hair loss and weight loss and horrible mystery infections. And you say:
Holy Shit! My child has Cancer! AGAIN!
Again, yes again. You have done this before. You are older and wiser. So is your child; this time, she'll know what's going on. So you find videos and talk to the Child Life specialist, who gives you the book Oncology Stupology for your child. You read it. It's a great book, honestly reflecting the feelings of the cancer kid. And you cry. Because there it is ...
My child has CANCER. AGAIN.
You remember the string of candlelighter beads you began stringing for her last time "for a souvenir" of this journey that she wouldn't remember. Well. Now you will buy more beads, ones that you can hand to her as she accomplishes each little step. You go through the beads, doing the math. How many hospital admissions? How many finger pricks? One for hair loss, one for relapse. One for "birthday on chemo." 20 for chemo course. Others, you make guesses. How many blood transfusions? How many additional admissions for infections or dehydration?
You try to be conservative, and then it's time to pay. $45.37. Not counting shipping. For beads. Beads that, for the most part, are less than .25. It's just that you're going to need a whole lot of them.
A whole lot of them because .... MY CHILD HAS CANCER. AGAIN.
Tuesday, April 29, 2008
We started doing this, oh, a couple of months ago, when she'd have a sudden attack of the Terrible Twos and start feeling and acting out of control.
What was funny is that she'd get upset and come to me ... "Mo-om. I wanna take a breaf." She didn't think she could do it without me.
So ... I've taken my deep breaf. I'm not screaming anymore. We met with the oncologist. We have a plan. 10 days radiation, 6 months high powered chemo. Every third week (if we're lucky, and her counts stay up), we'll check into the hospital for 3-5 days. Fun!
We have a plan and I'd really just like to go with the flow and start the plan. It seems like a good one, and I trust the doctors. But we're trying to be good smart advocates for LW, so we're going to another cancer hospital on Monday to talk with one of their docs.
She'll need chemo, in any case, so we'll be going in for surgery -- tomorrow, if they can fit us in, Thursday if not -- to get a portacath put in. Wish us luck. Last time, it took 8 hours. (Granted, she was 7 months old with teeny-tiny veins. Now, they're just teeny veins.)
Take a deep breaf.
(And thank you for your comments, your prayers, your tears, making me laugh, and sending us love. Right back at ya.)
Monday, April 28, 2008
Blister: Blood clot with tumor clusters
Favorable histology. That's the one "good" in this, although it's really hard to call that good. Not completely devastating, maybe.
I don't know.
I feel pretty god-damned devastated.
I know I can live through this. I know tomorrow I'll get up and I'll marshall my forces and meet with doctors and get second opinions and make a plan.
I know I can live through this. But right now, at this moment, in all my self-involved pain, I'm not sure I want to.
With apologies to Meg Ryan:
"Yes, YES, YES, YES!!!"
"If our kids can see how they can find spirituality in Dance Dance Revolution ..."
And again, YES! I know that there are some UUs who are quite happy with their all organic co-op, "we keep a tv in the closet in case of emergencies," "I don't wear labels" lifestyles ... but where they see a moral lifestyle, others see as "inessential weirdness." That doesn't mean that they should change, but this assumption that their lifestyle is The Way and The Truth will keep us small.
(Great article about inessential weirdness)
I will blushingly admit that one of the big spiritual breakthroughs I experienced was prompted by ... a Rick Astley song. (No, not “Never Gonna Give You Up.” I was not rickrolled.)
Meaning can be found in all kinds of places. It does not reside exclusively on the mountaintop, surrounded by nature and wide blue sky. Tish-tosh, who couldn’t find meaning there? But I don’t live on the mountaintop. I live down in the suburbs, and I think the Internet is a force that can pull together people like nothing else before; having “Dora the Explorer” DVDs and a portable DVD player have been lifesavers this week, and some of my favorite family memories have been us eating pizza in the living room, watching a movie or even American Idol.
In the summer, Good Lord Willin’, we’ll go back up to the cabin we stayed in last summer, no tv or internet, where we’ll read books, go fishing, gaze at the stars and play “Poohsticks.” And I’ll find profound meaning there.
Rather than encouraging people to leave the current mainstream world, why don’t we give them tools to find meaning in that world? To make mindful, meaningful choices. Some will find great meaning in avoiding Starbucks. Others, like my sweet baboo, will get up early Monday morning and run across the street to the Starbucks opposite the hospital and buy someone a Venti Peppermint Mocha to give their beloved a little bit of happiness, before leaving to work in the corporate world of computers and systems.
I never say that "everything happens for a reason" anymore, and cannot conceive that I ever will again. But neither can I flat out say that coincidences are just coincidences, totally random.
The night before LW's scans ... when I had no suspicion of what we might be thrust into again -- I happened upon Rev. Marlin Lavanhar's sermon, Finding Our Song. Jess had put it up about a year ago on her fabulous Best of UU site.
His words have continued to echo in my head, as he spoke of the dichotomy of being utterly decimated by the grief, but being put in the "center of the village" so that others could help them.
Thank you for putting us in the center of the village. Your prayers, your notes, your love, to someone whom most of you have never even met, have meant so much.
I've written before about my realization about God ... let me hasten to add, this is just my realization, I do not hold it to be truth for anyone besides myself ... in my realization, I understood that God did not cause or control LW's cancer. "But when you grieved, I grieved," said The Universe.
And you are proof of that, for me.
Saturday, April 26, 2008
* I think that all top hospital executives should have to take a shower in a patient bathroom.
* LW is doing well -- the anesthesia seems out of her system. She watched a whole movie this morning and even talked a little bit.
* Everything is hinging on her passing gas. Once she passes gas, she can have a little juice. After the juice stays down, some food. After the food stays down, they can remove her epidural. After the epidural comes out, they can remove the catheter. After the catheter, the kidney drain. But everything is waiting on ... a fart.
* How do you explain to an almost three year old why this is happening? It's not like I can say, "Remember how you felt bad? We came here to make you better." She felt fine and was running around like a maniac the day before we came to the hospital. I'm trying to talk her through this, but I don't know if it's making any sense to her.
* I'm worried about ... church. We like to say, Oh, Don't Worry About That. You just put your attention on your family. But there isn't some magic that we can swirl around and put everthing else on "Freeze." I still have a term paper to write and I'm very concerned that the work I've put into Worship might backslide. Not in terms of the committee -- they're great. But in terms of getting speakers. The DRE-BFF is at a conference right now. She has my schedule and has been charged with getting some great speakers into the pulpit. Our congregation is on this upswing in energy and we *need* dynamic preachers in the pulpit to keep it going. Momentum, momentum ...
* And of course I'm worried about LW. My brother works for a Prominent Cancer Hospital and I think that he talked to every single doctor there yesterday about this "blood blister thing." No one had ever heard/seen of anything like that.
If it winds up being malignant, then they have to treat for tumor spillage. The only way to do that is with radiation. In addition to the risks that radiation brings -- other cancers, infertility, etc. -- it will mean that we can't do the chemo that is planned, because one doesn't combine well with radiation.
Oh the mind ... race, race, race ...
You can think that you've gotten to a certain level of philosophy, only to find yourself caught off-guard, realizing that you still have little pockets of unhelpful-belief that you thought you were done with. Your mind wanders and you find yourself thinking, "Well, I have all these things that I'm planning, things that could really have an effect on making the world a little bit better place, but I can't do them if I have to drop everything and focus on cancer, so surely God will take that into consideration ..."
And then you snap your head up and say, Whaaaat? But I don't believe that. I don't believe that God is controlling whether or now LW has cancer ...
Little pockets. Kind of like tumor spillage, you just don't know where those thoughts might be hiding ...
Friday, April 25, 2008
So then, more people come in to take a chest Xray, which means you have to lie flat and be moved this way and that and it all really, really sucks ...
And then, because Mom has been assuring you that they're just going to take a picture of your chest, "no owies" -- when you hear the machine snap, you do what you always do when someone takes your picture. You smile.
(A really pitiful in all its bravery smile.)
And your dad has a look on his face that betrays that what he really, really wants to do is go crawl under the sink and bawl. Because he's strong and steadfast, but the no-fail kryptonite is your smile.
But he doesn't. He just smiles back at you and tucks your covers in.
Thursday, April 24, 2008
"We've never seen this before," is not something you want to hear from your surgeon, especially when it's backed up by your oncologist.
Surgery today, delayed by several hours, but it was for a liver transplant, so hey, Me No Bitch about that. They removed the nodule -- still don't know whether it's tumor or nephrogenic rest.
And there was a large "patch" near it, that looked like a blood blister, according to the surgeon. They couldn't just remove it, as they would have had to just remove the whole kidney. So ... they surrounded it with sponges, removed the top, and captured the liquid inside for pathology. Underneath, it looked like clean, healthy kidney. We're holding on to that.
If it's tumor, then that means tumor spillage, so we'll have to do radiation.
So now we have two areas to worry about. Two different pathologies to be done.
I'm not trying to be hopeful. It does hurt more to get your hopes up, then have them dashed to bits upon the sharp rocks.
I'm not trying to not be hopeful. There's no reason to grieve and moan before we know what's what.
I'm just trying to be. Just trying to stay in neutral.
Meanwhile, I'm looking at Little Warrior. She seems to be resting peacefully. I have my ipod with a speaker near her, playing a loop of a Brandenburg concerto that she likes to sleep to for some odd reason. Pretty up-tempo for sleeping music, but hey, this is Wild Child. She's breathing room air, no canula or anything. She's Octopus Girl, with a catheter, monitors, kidney drain. And an epidural, so she doesn't seem to be in any pain.
I have to admit, that I get occasional irrational flashes of anger. As I wrote the sentence about the epidural, I flashed back to a recent Ethics class in which a young classmate of mine did a presentation about euthanasia. In her presentation, she talked about how suffering brings you closer to God, and so you should be willing to suffer, even to the point of not turning to pain relief.
I wish she were here. For just a moment.
The anger fades. The music seeps back into my consciousness. The Husband, feeling edgy, has gone in search of a milkshake, his comfort drug of choice.
But I'm not cold, I'm not wet, and I'm not hungry,
So, classify these as good times.
I'm not quite ready to classify this as a good time. But it's all relative. If the spots they removed turn out to be a big Something, I'll look back on this teeny period of innocence as good times, a brief honeymoon from upcoming reality.
If the spots turn out to be a big Nothing, I'll look back on this period as one of anxiety and stress. Not memories of good times.
I'd prefer the latter. I have tons of memories of good times. This doesn't need to be one.
Wednesday, April 23, 2008
For the most part, I'm okay. AdventureGirl is here, my dear sister-in-law. Last Fall, she scaled mountains in Ecuador. This week, she takes care of Team Lizard Children. Which will she decide was more difficult?
I'm up and down. Mostly up, because Little Warrior seems fine. Stinker bell, even. But tonight, when I put her to bed, I cried a few tears. Just because it will be a few nights before I see her sleeping that peacefully again. It will be with an oxygen canula and iv and pain. And I just got so damn mad, you know? That this pink-cheeked ball of fun is going to have to go through that. Again.
The Husband and I both think that it's going to be tumor. Is it based on something, or is it trying to protect ourselves? I don't know. We keep repeating to each other ... "and that's okay. We've done it before."
But we're scared. No doubt about that. There is no accepted protocol for relapsed Wilms'. There's a study all ready, but they don't have enough money. Cure Search has an account set up, but we're not there yet. Still more money that has to be raised. I can't help but think about the old thing about the military needing to have a bake sale ...
Anyway, there's not a standard protocol. So you just try something. What you've done before, if it worked, or what someone else has done, if it hasn't.
Okay ... can't think about that now.
Now ... I need to go lay out my clothes and charge my cell phone and go to bed.
Tuesday, April 22, 2008
I have a big to do list
But life still operates in normal
LW will go with me to
The bulk store and the everything store and the grocery store
We will fill the pantry
For while we are gone
I am drinking coffee
From my kitchen
Just the way I like it
She is sprawled on the floor
Just the way she likes it
The house is a wreck
And there's a million other things I should be doing
And things are just normal
She drops her banana on the floor
Picks it up and eats it
And that's fine with me
Nothing is changed
But it might be
And I know what it's like
To live in Not Normal
I've got two more days
Of living in normal
In Every Moment
Monday, April 21, 2008
But on a smaller scale, velly nice.
Beautiful, by Elvis Costello. The BFF-DRE emailed me a link. It's available!
I have previously blogged my discontent with hearing songs in movies/tv shows that are not available for purchase and this was one.
Bwahahaha. Mine, mine, mine. (And you can hear it free, on the above link.)
Now, if Allison Krauss and Dwight Yoakum will just make a recording of their version of If I Were a Carpenter.
So, there we go. 1:30 central time, light a candle, offer up a prayer, send energy or heck, eat a slice of pizza and think of us.
Saturday, April 19, 2008
My big sister carried me on her back for a little while. As usual, they didn't have any t-shirts my size. I guess they think kids don't get cancer. (Mom's note: The benediction, of course, ended with "in Jesus's name". Because apparently only Christians get cancer.)
The first lap in the relay was just for cancer survivors. Mom walked with me, though. Dad said it was okay, because Mom survived my cancer, too.
As we walked around the track, people stood and clapped for all of us wearing the "Survivor" shirts. The track has this cool red dirt and little rocks on it, so I kept trying to stop to play with it. Mom wouldn't let me stop. Meanie. But she promised I could play with the dirt at the end.
Eventually, Mom gave up and just carried me. As people clapped for me, I waved. I think Mom didn't understand what was going on, because she was crying a lot of the time. See, if she'd just stopped and played in that cool red dirt, I just know she would have felt better.
Don't worry, Mom. I beat cancer's butt when I was just a baby, and if I need to, I'll do it again!
Thursday, April 17, 2008
"How are YOU doing," asks a friend.
I'm doing fine! I assure her. Then I add, Except for when I'm not.
The latter is rare, I'm happy to say. LW looks fine, acts fine ... well, truth be told, she occasionally acts like a little toot, because she's 2 and that's what she is. But she's also funny and fat and energetic. So ... cognitive dissonance.
She was weaned about a month ago. I have slowly started nursing her again, see if I can get my supply again. After more than a decade of nursing, it shouldn't be a problem, says DRE-BFF, who is also an LLL. (La Leche League Leader.) Not that she'll get much nutrition that way, but since there are adult cancer patients who are drinking breast milk in the hope that it'll help, it seems silly for me not to. I don't know if it was the breast milk, but last time around, her counts never dropped, an amazing thing. Don't judge me.
I sit her down and look at her seriously. It's not that you're not a big girl, I explain, it's just that you'll be going to the hospital for surgery, so that's why I'm letting you nurse. Okay?
Yeah whatever, Mom. Who cares? Boobies! Yay!!!
I worry that she's like a recovered crack addict, given another hit. Will she wind up on the street, trying to score from the new mother down the street? Strung out, offering her precious teddy bear for half an ounce of breast milk?
I began the South Beach diet Monday a week ago, the day before we took her for scans. I'm still on it. Hey, it's one thing I can control. I get up this morning, and so far, I've lost 7 1/2 lbs. I find myself humming, Feeling Groovy, while making breakfast. I marvel at that. Don't judge me.
Read the online news. Am glad to see that I wasn't the only person disgusted by the questions ABC asked (or didn't ask) last night.
I'm trying to fatten LW up. Whole milk, tempting foods. Anyone know where I can buy some plumpy'nut? (Just kidding.) The other night after dinner, she wheedles, "Can I have another cookie?" I automatically say No ... then shake my head at my idiocy. Kid, you can have as many cookies as you can stuff down your gullet. Especially since your siblings have already gone to bed and can't squawk about it. Don't judge me.
Gotta get back to my school work. I'm trying to finish off all my Ethics work, so I don't have to worry about that. Have completed my term paper on capital punishment. Trying to get at least two weeks ahead for my online class.
In the midst of this all, our music chair quits. As worship chair, it seems to be falling to me. I've been communicating to our leadership that I Can't Take This On, but no one seems to be moving. This may take Strong Words.
Tonight, I take the kids to the doctor -- the three older ones need to get all their upcoming vaccinations in case LW goes on chemo. Afterwards, a trip to Toys R Us. Don't judge me.
Surgery will probably be next Thursday or Friday. We're waiting final confirmation, because our surgeon wants the kidney surgeon to help him. So it'll be the same team that operated last time. That makes me feel better.
So ... I'm fine. But just in case, I'm not wearing eye makeup. Because I don't know when "except when I'm not" will hit.
Tuesday, April 15, 2008
Those are three of Job's friends, and at first, they're great. They just come and sit with Job for a week, in silence.
But then, they open their mouths.
Dad says, they're trying to understand. This is what friends do. They sit around, and talk, discuss, trying to figure out why this is happening.
I say -- they're being asshats. Trying to find out the reason "why," sure, because like most humans, they want an assurance that it can't happen to them. It happened to Job because he's a sinner. But they're not sinners, so they're safe. (I don't know if this is still true, but back when I was in college, I remember reading that if you were a woman raped, you wouldn't want women in the jury box. Because they would be searching for something that you did wrong. Because then they could say, "I would never do that. So it'll never happen to me.)
Anyway, I contended that his friends were being asshats, pushing until Job finally loses it. Which proves, I wrote, that you can survive death, destruction and boils, but what will finally break you will be your friends being asshats.
Let me state emphatically and unequivocally that my friends are NOT asshats.
We argued back and forth. I imagine there's a little bit of truth in each of our views.
I'm not leading up to anything. No one has been an asshat to me, though I will admit to already being tired of those who are not close to me attempting to explain why we may be facing a relapse. They mean well, all of them. But I'm weary of their thoughts.
Gay Rights Church Bans Weddings
Andy refuses to take credit -- The Board decided all this without my interference, he says. But he's pretty proud of them.
But it's stressful, to be thrown into the spotlight like that. So send a little energy to their congregation.
Monday, April 14, 2008
I really thought of keeping it. I'm hungry to get the ball rolling, in terms of UUA paperwork. Get the minister interview done, the district executive one (whoops, gotta cancel that, too), go get my head shrunk at one of those career centers ...
I'm waiting on a call from LW's surgeon to schedule the surgery. Chances are good that it won't be this week. So I'll be available. Physically.
But I have to admit that I don't think it's a good idea. This minister doesn't know me. So here are my choices:
a) Do the interview and not mention that my daughter might have cancer again. Yeah right. I do not have ice water in my veins. Plus, it seems dishonest, for some reason. I mean, I'm not applying for a job. But as much as I might want to pretend that this is no big deal, it is.
b) Do the interview and do mention it ... oh, I don't think that's right, either. For one thing, depending on my mood swing of the moment, I just might start bawling if she showed any sympathy. But also, I think it puts her in a bad place. Any minister would try to give a fair assessment, but who wants to be in the position of slamming a cancer-Mom? And then there's the issue of "is this really 'me'" ... she doesn't know me. So am I acting like this because of the cancer or am I like this normally? Whatever "this" is ...
So I think I'm going to cancel. Besides, I have two classes that I want to complete my work in, a house to clean before a relative comes in to stay, and oh yeah ... time to freak out, every now and then.
I'm in a weird place. Last time, I didn't even have the chance to grab clean clothes ... went to playgroup in the morning and before night, we were in the hospital. Everything screeched to a stop.
This time, it's different. I can pack. I can notify. I can clean house and have fresh food in the refrigerator. I can continue my classwork.
So ... it kind of seems like normal life, for the moment. Except it isn't.
I think it's the right decision.
Sunday, April 13, 2008
We are at a park, watching the kids run around. This morning, we got up, went to church. I went in to Morning Blessings, "a quiet, reflective time for community and contemplation."
Turns out, I can handle anything but community and contemplation. The spider was caught in her own trap. Tears, tears, tears.
The Husband was hugged by several other men, men who don't normally hug him. A bit weird. We had to explain to others. We tried to reassure some.
"I don't want to go to RE," said The Boy. "I don't want to talk about it." The Princess just wanted to stay by me.
So we left, early. "I know where to go," I told The Husband. There was a little park that I had driven by, before. We stopped there and the kids ran, climbed, swings, monkey bars. We sat and watched them.
"It wasn't denial," says The Husband. He says this is just how it's going to be. We'll feel fine, then we won't. Then we'll feel fine again.
"We found a nature trail! Can we all walk it?"
Sure. We set off. "Maybe it's the trail to Narnia!" The Boy and the Princess run ahead. Bo Peep slips her hand in mine. "Think we'll find tigers on the trail?" I joke. "No," she says somberly. "Bears."
Bears are her fear. When she has bad dreams, bears are almost always to blame. She woke up one time and fussed, "Oh! Those bears just won't leave me alone!"
I can't relate. I love bears. Pooh Bear and teddy bears and Little Bear and even the Three Bears. Mine is snakes.
The Boy informs her that the chances are greater that she'll be struck by lightning, stung by a bee and in a car accident all on the same day, than be attacked by a bear when you didn't do anything wrong.
I look around for LW. She is safe, up on her daddy's shoulders. We enter the trail.
Lizards, butterflies, dragon flies. "I don't think we should go there," says Bo Peep.
It's okay. I've been here before.
We find a hidden bench. It's nice. We turn around. "Watch out for that branch," I call to The Husband. It's right at the height of LW. "I saw it," he says.
We walk back, let them play some more. It's good. It's a beautiful day, just slightly cool, blue skies. If she goes on chemo, we won't be able to do this for a while. LW goes streaking by me, headed for the swings at the far end of the park. Fearless. I start to follow her, but her big brother has spotted her and is running after her. He lifts her into the swing and gives a push.
The Husband and I figure out lunch and head for the store, for home. Tomorrow is our appointment. I have some doodle-dolls that I had put back to donate to the clinic. I thought they'd be good for cancer kids, because you can draw on them. Incisions, port, whatever.
Tomorrow, I'll present one to LW. We'll take it with us, and I'll ask her surgeon to draw on it what is going to be done, so maybe she can understand.
It's okay. I've been here before.
Friday, April 11, 2008
And they're in it with you, he said. And they'd want to know. Keep writing. Because someone may find it, and it might help.
I have had my wallow; my eyes are swollen. I may come back to Wallow Town occasionally, but it is Time To Move On.
The woods are lovely dark and deep. It is tempting to stay here, hugging LW, futily searching the internet for a story of someone where this Exact Same Thing happened, and it all turned out to be nothing, thinking of the what-ifs and whys and how life isn't fair.
But I have promises to keep. Intro to Lib RE homework due this morning, hymns to choose, an RE plan for the fall to draft, 2 term papers to write, speakers to schedule. Obladi oblada, life goes on.
And miles to go ...
Thursday, April 10, 2008
It doesn't matter. Sure, you found a new definition of God and came to peace with some things and realized some things and understand some things.
It. Doesn't. Matter.
Because here I am again, silently screaming in my head, "It's NOT FAIR!!!!"
I don't want to go back to that world!
I don't want to walk around with a 100 lb weight on my heart.
I don't want to cry every single day.
I don't want to have to try this explain this to her. Don't want to buy prizes and bribes for letting them dig around in her.
And my older three. This is changing who they are. IT IS CHANGING THE PEOPLE THEY ARE AND THE PEOPLE THEY WILL BECOME. And there's not single thing I can do about it.
Over and over again, It's Not Fair. It's Not Fair. It's Not Fair. And no matter how I try to not do it, no matter how much I know that it doesn't work like this, the universe doesn't punish a parent by giving a child cancer, there is no lesson good enough to justify cancer, still ... my thoughts race.
Is it because I was beginning to take it for granted? Because I wasn't scared enough? Because I'm not generous enough? Because I joked that if it happened again, it was God telling me not to be a minister? Is that the truth, or am I being punished for acting as if ministry were a whim, dependent on the good fortune I received?
Why can't it be me this time?
I'm not nursing a baby anymore. LW can go in daycare; she'd probably love it. The other three are in school. Let it be me this time. Let me be the one.
I complained because I hadn't lost much weight on my new diet
I fussed at one daughter because her room wasn't clean
And another because she was whining about a bent folder
I took a shower and thought about getting a haircut
I was thrilled because we got our printer working
I drank black coffee and read the newspaper and picked up a dead roach and checked my email and thought of doing the laundry and procrastinated on some things and perused some political blogs and picked up a few bits of clutter and looked forward to seeing a friend and her mother
Tiny spot on her right kidney. Might be tumor. Might be nephrogenic rest. Either way, they'll do surgery.
Oh God. The rage the denial the fear. I can't help sobbing and LW keeps asking "Why are you crying, Mama?"
It might be nothing. It might be nothing. It might be nothing.
Oh God. Please.
Monday, April 07, 2008
Same old, same old theme. Scans are tomorrow and my subconscious is fretting that I'm just not fretting enough!
A couple of nights ago, it was a giant. There was a rather stupid giant living in our house. Fairly innocuous, but we knew he could turn on us. And eat us.
Last night, it was cobras. I was sleeping kinda on my stomach, and there were two cobras stretched out on my bareback. They were just relaxing, so I wasn't in an immediate state of fear. But I was reminding myself to stay relaxed, stay calm. Don't tense up, because they were right on my back, and they would feel it. And that might startle them, and make them attack.
I'd like to order a sexy dream, please. Or a dream about bread, since I just started South Beach.
Anything but cobras and giants.
Sunday, April 06, 2008
Friday, April 04, 2008
Inch by inch, row by row, gonna make this garden grow
All it takes is a rake and a hoe and a piece of fertile ground
Inch by inch, row by row Someone bless these seeds I sow
Someone warm them from below
Til the rain comes tumbling down
It makes me remember when I was a teenager, visiting a cousin of mine, who lived in a small town. Across from her house was a small African-American church. The members were outside, having some kind of a picnic, playing music. I was grooving to the beat. (Truth be told, I've been known to groove to anything, including ring tones.)
"Don't do that," she instructed me. "They don't like it when you dance to their music."
Is that where we still are? "Their" culture and "our" culture, and never the twain shall meet? "African-Americans are welcome in our churches. Our RE did a Kwanzaa skit last December and many of our members are voting for Obama!"
Okay, okay. I'll dial down the snarkiness.
Here's an idea. Rather than saying, "Why won't 'they' come to our churches?" why don't we help set up African-American UU churches ... where those who are white, Hispanic, Asian, and Vulcan :) are also welcome to attend?
I don't have a problem with the concept that people want to be with other people like themselves. That happens at every UU church in the US. The difference is, how we define "people like us."
Come Sunday morning, we want to be with people like us. For those of us who are white, defining "people like us" by race is so unnecessary, we don't even consider it. Really, the rest of your week, you never get the experience of being with other white, straight males*? So you need to go somewhere that you can have that unique experience?
Probably not. But many of us do have the experience of weaving our way through a weekday world of the politically conservative, the religiously not-progressive. A world where it is assumed that you are straight, Christian, and probably vote Republican. (Depending on where you live and what is your profession. YMMV.)
So, come Sunday morning, we want to be around people like us. Where people know how 'vegan' and 'Kucinich' are pronounced and the only gay jokes you'll hear are from your outrageous gay friend Mark. And even he will get a disapproving look. After the chuckle of understanding.
Sunday morning, we want to go to a sanctuary. We want to go to a place that feeds our soul. And I'm willing to bet that if we wound up with some churches that reflected a more charismatic, answering-back, "tell your neighbor, 'Respect and Dignity,'" "Amen!" African American UU Church, there'd be a lot of white UU's crashing the party. And I'd be one of them.
Because I want to be around people like me.
* Going for the most obvious example. You could also remove "straight." And you could remove "male." And leave it as just "white."
I'm very interested in church planting, as a topic, and curious whether we've ever had an African-American minister, music director and DRE (or some combination) start a church in a black neighborhood.
I know we've attempted integrated revitalization -- I'm a big fan of Davies Memorial Church. But have we ever tried it from the get-go?
I'm in communication with someone at a predominantly African-American church near our church about having a "deep listening" group made up of members of both churches, focused on racial dialogue. "A More Perfect Union - the Continuing Discussion." She seems enthused, too.
Maybe there will be more than one group. (Definitely want to keep it small groups.) I can dream!
And I'm really excited about using the deep listening format for this, since in deep listening, there's no interruption, no arguing -- you speak from your own experience, rather than directly addressing another person's remarks. The focus is on the listening, not on "teaching" someone else.
But I would be surprised if there were not some profound learning.
Wednesday, April 02, 2008
It is because of Wicca that I have sympathy for and can understand the “born again” experience of religious ecstasy.
I was in my early 20’s when I discovered Wicca. I had faintly heard of it before, something about “real witches!” mixed up with “white witchcraft” and Stevie Nicks and a vague sense that this was something some women did in New England. It was certainly nothing I’d heard about in Texas. (Oh the irony … I was living in Austin at the time, a haven for pagans.)
A couple of years earlier, I’d purchased Mists of Avalon for The Husband, who’d expressed interest. I’d picked it up and gotten hooked. Hmm … female deity … priestesses … magic … it exposed me to a whole new world.
So, a couple of years after that, I picked up a romance at the library -- Charmed, by Nora Roberts, about the shy Anastasia. It used the word “Wicca” and talked about magic. Hmmm. Interesting.
It was at this time that the Internet, as we know it, was growing. No World Wide Web … you paid for your membership in Prodigy, and there you stayed.
But the Pagans were a) smart and b) lonely. Feeling they were all alone in the world, they created online communities. Anyone visiting the Wicca/Druid/Pagan board was greeted with warmth and generosity. They would happily answer the newbies’ questions again and again. Really lovely people.
The world that had been slightly opened to me with Mists of Avalon, exploded. On my new friends’ advice, I went to the mall bookstore (no Amazon.com back then!) and bought Wicca for the Solitary Practitioner. I stayed up all night reading it, occasionally waking up The Husband to excitedly read him a passage. (The Husband is not even remotely pagan, but he has always been uncommonly supportive in my spiritual pursuits.)
What I felt … it was as if I had been living locked up in a single house, and suddenly the front door was opened wide. Concepts that I had felt in my heart, had a name here, and were affirmed. Magick! A power given to all! A duality of female/male energy! Goddess! Seasons! A connection to the earth. A lack of judgment. A universal impetus to do good, not harm. Karma.
Wicca was a part of my journey and parts of it remain with me still. And ultimately, it has given me a deeper appreciation for Unitarian Universalism. I was born and raised UU and so it was something that I could take for granted. But now, when someone walks in our doors and after their first UU worship experience, with glowing eyes, they say, “This is my religion, that I never knew existed” … I know what they mean. I’ve had that moment, too. Through Wicca.
A day ... an hour ... a minute. Out of all of it, I think I know the worst minute. More than the initial diagnosis, more than being told "the chemo isn't working," the worst moment, for me, came on March 31. When I walked down a very long, sterile hall, then handed LW over to the anesthesiologist to go in for surgery.
Such a wonderful doctor, the anesthesiologist. "It's okay. Take your time. Kiss her. We'll take good care of her," she soothed me, then taking LW in her own arms to go through the scary swinging doors that led to ...
Well, in LW's case, they led to life. To survival.
But I didn't know that yet. Not when I let her go out of my arms.
I imagine the best moment happened that day, too. Was it when we got the first phone call up from the operating room and they said that they were finished with the first kidney, and that they'd saved 2/3 of that kidney? We knew that all she needed to live was 1/2 of 1 kidney. So that phone call meant life.
Maybe it was at the end of the surgery when the surgeon came out to talk to us. He looked so, so tired. The entire surgery ... I can't remember ... 10 hours? 12? He came out. I had already steeled myself for him to say that they hadn't been able to save any of the second kidney. "We saved 1/2."
1/2! 1/2 + 2/3 is more than 1 and we knew plenty of people who lived good long lives with one kidney. It was unexpected. It was far more than we could have hoped.
My parents and mother-in-law went home and The Husband and I went to the cafeteria to eat while LW was in recovery, as the doctors and nurses dealt with getting her out of anesthesia, inserting a breathing tube. It would probably be a couple of hours before we could see her.
We got our food and sat down. Immediately, we got a phone call from the very delighted anesthesiologist. "She's ready! She's so strong, she's breathing on her own!"
Maybe that was the best moment. I don't know.
In retrospect, for the worst day of my life, it was a pretty damn good day.
Tuesday, April 01, 2008
The recent furor over the Rev. Jeremiah Wright -- that shows no sign of dying down -- has made obvious the danger in having a place where a religious leader can speak their own mind.
I have kept this blog "anonymous" -- the quotation marks are intentional. Anyone who knows me would instantly know this was my blog.
My reason for anonymity was to give myself the space to be honest. Especially when I was going through the worst of times, I needed a place to be able to open up. But I know myself -- if I knew that people who know me "in real life" could read my blog, I would begin to write for them, assuring them that I was fine, everything was good, no worries.
But who are we kidding. If a reporter were ever to take interest in my blog -- or anyone's -- they'd have name-rank-and-serial-number within an hour.
I don't mind owning my words, as confusing or mistaken as they might be at the time. I take, as my philosophy on this matter, the words of Emerson:
However, we have now entered a world in which not only will I be held liable for any thoughts I utter (or write), but my audience shall be held liable as well. If I say -- or write -- something outrageous, it can be used against them. How far might this go? If we use this on a presidential candidate today, who will it be tomorrow? Senator, mayor, councilperson? President of the PTA? Teacher?
A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines. With consistency a great soul has simply nothing to do. He may as well concern himself with his shadow on the wall. Speak what you think now in hard words, and to-morrow speak what to-morrow thinks in hard words again, though it contradict every thing you said today. -- 'Ah, so you shall be sure to be misunderstood.' -- Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.
We are entering a time of forced transparency. It's a YouTube World, Baby, and we are just meat for the grinder. Podcasts of our sermons, worse yet, videos -- can be used not only against us, but against those for whom we've pledged to minister to. 5 seconds of a 20 minute sermon can be pulled out, twisted around, stripped of original meaning. Uploading our texts to share with the world is like handing weapons to those enemies of our parishioners.
And so, dear friends, I leave you. I will miss you, I will continue to follow your prophetic voices, even as I silence my own.